Food for Thought
C’s relationship with food is one I can describe with one word: weird. He’s not weird, but he thinks food is weird. Eating has been (and continues to be), without doubt, the biggest struggle he’s had. And it’s been the most challenging one for me as a parent. I remember details surrounding events relating to his relationship with food in vivid clarity, just like he remembers exactly what he ate to get which GeoTrax train part.
First was the “cheerio incident,” and another was the comment his first feeding therapist stated about kids like C dying in other parts of the world, both described here. But the most confusing, the most powerful, the most educational, and the most life-changing remains a simple phone call. C’s feeding therapist had insisted we get food allergy testing. We had the blood drawn and I felt quite smug that nothing would show up; C ate graham crackers, yogurt and drank cow’s milk with abandon, and in fact those were often the only things he would eat.
Then came the phone call from the nurse in our small-town doctor’s office. “He’s allergic to wheat, milk, and eggs,” she said a little too cheerfully. I watched him, slurping milk out of his sippy cup, and literally sank to the floor in tears. “What’s he going to EAT?” I cried, sobbing, wondering if finally, my child really would starve himself to death. Still not understanding the severity of C’s feeding issues, the nurse said, “Well, you’ll just have to take him off those foods and substitute other ones. No big deal.”
She actually said, “No big deal.” Really. Honestly, other than the trauma surrounding his birth, I couldn’t imagine much more of a big deal for this particular child. This was (and is) a child who could tell if we switch brands of baby food jars. Currently, he can tell the difference between different colored kernels of corn. This was nothing short of a nightmare, and I had no idea what to do next.
In my usual fashion, I dove into research and discovered that people were already recommending gluten (wheat, barley, oats, rye) free, casein (milk protein) free diets for speech delayed children. Even though autism wasn’t even on our radar screen at the time, it is a common first intervention for children with that diagnosis, and one that brings great success for some. So off we went, I took out milk first by adding a mere teaspoon of rice milk to his milk and worked up from there. Two weeks later his eczema was cleared up and some unmentionable bodily functions had improved.
Yet how and what C eats has changed everything about what a “normal” family does. Thanksgiving is irrelevant to him. Restaurants are places that hold absolutely no interest. My mother wishes she could take him to the ice cream shop for a treat. And in an attempt to look on the bright side of things, I have been slightly thankful that C is not interested in ice cream whatsoever, because it makes him not being able to have it far easier. He doesn’t want cake, candy, or other such things. He’s probably the only child in the world who has never tasted chocolate, pizza, or spaghetti sauce. He only enjoys Halloween because he gets to knock on people’s doors and chat with them; he gives all his candy to Mom and Dad (after, of course, sorting it by brand and color).
Years later, C is still GF/CF. Now I am too, due to my own recently discovered celiac disease and an allergy to milk protein. It’s been harder on me because I enjoy food so much more than C. Yet even though C’s feeding struggles are still enormous – to the point where I have come to accept the fact that he will likely always struggle with food – his health (and my own) is so vastly improved over those early days it’s hard to imagine ever going back to that kind of eating again.
Entry filed under: autism. Tags: autism, casein free, celiac, feeding issues, food allergies, GF/CF, gluten, gluten-free, high functioning autism, special diets, special diets for special kids, special needs.